Clinical Trial Decisions

[affected]

Maybe by the time you have completed 4 dosings and they have put it to you in writing you will know what you think?

I'd try to let that go for now and concentrate on helping them collect as much data on results of every kind while in the trial.

Thank you for being willing to be part of a trial that may truly benefit all PALS!

 

[konagirl]

That's pretty much what I said to Chad too, there's nothing to even make a decision about at this point. We do not even know yet how he will tolerate the higher doses, so there's that. But wanted to at least share here what I have been told in case anyone else is trying to decide on this trial when enrollment opens back up.

 

[phyllise]

Just in case anyone is following this CDG-0134 trial, I wanted to post a little update on where we are:

Chad was supposed to go back for his second dosing and second week in the hospital on 7/11. This has been pushed back to 7/25. The reason being is because Genetech wanted all 8 participants to complete their first dose, before anyone began their 2nd round. The 8th slot was just filled (at mayo with our Dr) so that person will be dosed soon in our original 7/11 spot, and then the round 2 doses will begin.

Something odd...There are only 8 slots for this trial. More may open down the road, but for now there are only 8. Our clinical coordinator shared some news with me this past Friday....she said this is not in writing yet, but there has been enough talk from Genetech on it that she feels comfortable sharing it with me: At the end of this trial, once all 8 patients have completed all 4 dosings, they plan to give all 8 of us the drug to take everyday, twice a day, at the strongest dose tolerated, for 4 weeks. Our clinical coordinator says she has never seen this happen, and even our Dr is pretty amazed.

This is Phyllise I was offered the trial but didn't get to participate but I was wondering if any adverse or beneficial effects have been reported??
I know it is a first dosing but wanted to stay as updated as possible on this trial.
I hope you guys were able to find a solution to being able getting out of bed and walking. I wish the best and truly hope this is the one!!!!! Take care